Why some people with ME/CFS react more strongly to medications

[Utsikt]

And not only PEM. Simply feeling worse can be awful when you already feel horrible. Why should anybody want to endure that when in most situations the medications probably aren’t of much use?

Some medications might be needed for non-ME/CFS reasons.

 

[rvallee]

I think this would be heavily selection biased no?
Those who are likely to sign up for heavy drug trials probably overlap very little with those who are very sensitive to meds.

I don’t think we can assume drug trial participants to be representative of pwME at large in this case.

Maybe a bias but probably not heavy. I think I do have a relatively stronger reaction, although most of it could simply be similar to how scratching a wound hurts more than scratching healthy skin, but it wouldn't be in the way of me participating in a trial. I wouldn't even think once about it.

Side-effects tend to be minimized in medicine. There is a lot of the bias like what we see in vaccine, trying not to discourage people from taking medication because of those side effects, and also way too much belief in the magical nocebo. It's just as probably that we are more aware and atuned to them, for a similar reason why a $100 parking fine hurts more when someone is broke vs when they have a good salary.

 

[Holinger]

What sort of negative reactions did you have, and did you react to anything other than alcohol and antihistamines?

I just felt twice as deplorable on those two substances where I could tolerate them normally before I had me/CFS. I go really pale on them which is really weird. One popular antihistamine/sedative injection for a migraine caused an anaphylactic reaction which is probably a seperate thing.

 

[Verity]

I just felt twice as deplorable on those two substances where I could tolerate them normally before I had me/CFS. I go really pale on them which is really weird. One popular antihistamine/sedative injection for a migraine caused an anaphylactic reaction which is probably a seperate thing.

Ah, okay, I see. I feel that way after a certain amount of alcohol. I’m not sure I would call this a general sensitivity to drugs, though; this seems like a pretty specific sensitivity to two substances. It’s interesting to hear of it with antihistamines because usually people only talk about alcohol. Are there other substances that do this?

 

[Holinger]

Ah, okay, I see. I feel that way after a certain amount of alcohol. I’m not sure I would call this a general sensitivity to drugs, though; this seems like a pretty specific sensitivity to two substances. It’s interesting to hear of it with antihistamines because usually people only talk about alcohol. Are there other substances that do this?

Ok with antibiotics. Feel like death on CNS Stimulants. Onions and garlic make me feel real bad. First generation Antihistamines death again. And unbelievably - feel bad on Vegemite (Australian). A lot of drugs do make me feel worse where normal people don’t have that so maybe it is a disease dependent severity thing.

 

[Verity]

Ok with antibiotics. Feel like death on CNS Stimulants. Onions and garlic make me feel real bad. First generation Antihistamines death again. And unbelievably - feel bad on Vegemite (Australian). A lot of drugs do make me feel worse where normal people don’t have that so maybe it is a disease dependent severity thing.

Interesting. Thanks for sharing. I’m baffled at what these substances would have in common. (Except I did find out Vegemite contains onion, so that might explain that)

 

[Verity]

If anyone else here has their ME worsened by substances other than alcohol, I’d love to compare those to Holinger’s list. It would be interesting if they were the same or had similar properties.

 

[AliceLily]

For me it felt like the impact of side effects on top of the ME were too intolerable and it did feel like the ME severity was interacting and messing up metabolism of some medication.

I did not tolerate antidepressants, prednisone, and the Panadol brand 'Pams' dropped my blood pressure suddenly leaving me bent over, very weak and feeling like my heart was going to stop.

There definitely is something connected to the ME going on with intolerance because I remember in my sickest years I couldn't even drink a coffee without getting very jittery and buzzed up. I now can have two coffees a day on rare occasions at moderate ME and am okay with it.

I have just remembered another tablet Stemetil gave me a very unpleasant feeling in my eyes. I can't recall experiencing that with Stemetil before ME. As I said above this was all in my severest years.

I was able to take antibiotics.